Here you can share your experiences with substances that are ingested, inhaled, or otherwise consumed for the purpose of relieving RLS/WED, other than prescription medications. For example, herbal remedies, nutritional supplements, diet, kratom, and marijuana (for now) should be discussed here. Tell others of successes, failures, side effects, and any known research on these substances. [Posts on these subjects created prior to 2009 are in the Physical Treatments forum.]

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.

Had minor rls syndrome last year every now and then but when I went cold turkey due to minor opiate use then the rls really reared its ugly head - no sleep and miserable. So, after extensive research on the internet I found several sites that said inflamation was the root cause. So, after researching this I ran across the website below - some here may be familiar with it. Any rate the battle plan to reduce the inflamation by getting rid of all those inflammatory foods and replacing these with anti-inflammatory foods has made a big difference! Been working this plan for about 8 days and haven't had a major attack in 3 nights. Yes, it is work but so far I have seen a great improvement! I hope this diet does the trick but for now I am feeling much better. Hope this helps, I am also hoping this will help my insomnia.

I too have had considerable success with diet changes. I simply eat foods as whole as possible, with as few added ingredients as possible. I do not eat any gluten or dairy, and I avoid added sugar. I eat lots of vegetables of different kinds, cold-water wild fish at least once a week, and organ meats about twice a month but I was eating them 3 times a week at first. I avoid most grains except rice and some quinoa and buckwheat (my personal thing - other grains seem to make my WED/RLS kick in). I don't eat anywhere near as much carbohydrate as I used to (I actually was in ketosis for a while but I eat more carbs than that now).

My WED/RLS became severe after augmentation on dopamine-type meds and remained severe, so either the diet works or the effect of augmentation is finally wearing off. I take 1/3 of the medication dose I used to take; the improvement has happened gradually over 3 years.

I hope your dietary changes continue to work for you, and that you can embrace them as part of a new lifestyle.

Hey badnights – thx for your response – kind of cold up there? It appears you have made great strides with your diet. I am a Parkinson’s patient so I have to take Sinemet and also Requip. But it appears you wrestle with rls nightly or just when it flairs up? What is the WED of the WED/RLS? Also, if you wrestle with your rls a lot have you made a vicious/aggressive attack on inflamation? Have you seen the site below?

A success story – I have not slept since Jan. 17, except for 2 2 hr sessions last Thursday night because sleep has been impossible since I came off that small run of opiate use but last night went to bed at 11 PM and got up 3 times to go to the bathroom (new supplement) but from 1:15 on I slept and woke up at 6 AM – praise God. So the inflamation was affecting sleep also.

Any rate – I hope you get complete relief from this dreaded rls – I am not out of the woods ye but I am seeing great progress and for the first I am actually hopeful. But I did make an aggressive attack on inflamation causers and sought not to compromise in my attack on inflamation - the site I gave was a helped me out greatly.God bless.

Yup, it's kind of cold up here! I do have daily severe WED/RLS, although it is so much better than it was a few years ago. I'm glad you're also having success.

The information on that website you found consists largely of extensions of what is known into the realm of supposition by making assumptions or a series of assumptions - what we in science call arm-waving. Another name for it is pseuco-science. It can sound very scientific, but some of the conclusions drawn are a step or more away from conclusions that can justifiably be drawn from the cited references. A number of assumptions are made without being explicitly identified. This tends to happen with authors who haven't been trained in science, but even scientists can do it at times. There is some good information on that website. The problem is that there is also plenty of arm-waving, and there is no way to distinguish the good from the bad without research.

So we caution you not to believe all you read on that website, but encourage you to try dietary modifications to seek improvement. There is no known cure for WED/RLS (we can't, after all,change our genetic code) but remission of symptoms is common.

A healthy diet is bound to help everything in our lives. Reducing inflammation in our bodies is bound to help everything (except at sites where our bodies are actively fighting infection). So I for one am interested in hearing more about your dietary experiments!

Hey badnights – regarding your request below:“So I for one am interested in hearing more about your dietary experiments!”I will seek to provide more details on my diet but I am recovering from a bad fall on Saturday night where I fell and fractured my right clavicle in 2 places – thanks Parkinson’s!!! LOL.But I am starting to sleep again – little by little - and no RLS to speak of since last week. But I am not sleeping in my bed right now but on the couch due to my injury which I seem to feel the RLS a little in bed more but any rate no RLS for now – praise be to God!

Since you're taking Sinemet daily (I assume) and Requip, both of which cause WED/RLS augmentation (Sinemet particularly fast, too), you will have to be strict about your diet and other lifestyle factors so that you don't develop WED/RLS augmentation. Avoiding coffee is probably the most important, even though it's so hard to quit.

I am thinking you should be priming your doctor to deal with possible augmentation or future worsening of the WED/RLS. If you have some dollars to spare (I think it's 30 or so), there's a great little book called Clinical Management of Restless Legs Syndrome, 2nd edition (be sure to get the second edition!) that is written clearly enough for laymen to understand. It would be a good read for you, and you could mark parts to show to your doctor. I actually bought a copy for one of my doctors

In addition to the book or instead of it, the Foundation created the Medical Bulletin, which is a wonderful thing to print out and give to your doctor. You have to be a member to download it, but you also get access to many brochures, including 3 or 4 on augmentation.

Besides priming your doctor, you might want to check into the availability and legality of kratom, which is a herbal product that has opioid-like properties. It is effective in relieving RLS/WED, some strains more so than others, and members here have devised various ways to drink it, but it is illegal in some states.

Hey badnights - regarding my fall - it is getting better -thanks.Now this RLS thing - so far no RLS for about a week or so - I believe the diet ideas that I found on the inflamation has made the difference.Things I have almost eliminated 100%:White sugars, milk, processed food, all sweets, cokes, deserts, ice cream, fast foods, crackers, breads, hamburgers, fries, etc.

That is pretty much the way I eat except I don't eat that much fruit (my original diet was ketogenic; to burn fat as a fuel source I had to limit my carbohydrate intake, so the only fruits I ate were berries, which are nutrient-dense. I have since added fruits and other carbs back in, but I tend to watch how much fruit I eat out of habit and not wanting to eat too much sugary food.)

I also try to make sure I eat wild, cold-water fish at least once a week. Your elimination list matches mine almost exactly except I also eliminated all dairy (butter, cheese and yogurt as well as milk) and all gluten (wheat, rye, barley and the myraid products they're found in).

There has to be something to this diet thing ... I wish I could find the magic key to getting rid of my symptoms entirely. I Thought I was on my way to that point, only a month ago I was still improving so much that I was down to 6 mg of hydromorph contin some days (from 18 to 21 mg daily when I first changed my diet). But stress at work and personal life have derailed me, and my symptoms are getting worse again. I am planning to let myself sleep in tomorrow, if I can, in the hope that it will help my overall health.

What the heck is purple carrot juice? I also don't drink juices. Maybe I should start.

I had already looked it up! It's juice made from - guess what - purple carrots. Carrots were originally dark purple but were bred to be orange. Purple carrots are making a comeback now. They have lots of anthocyanins, which are the purple pigments that are also anti-oxidants. I think.

You made the following statement, "My WED/RLS became severe after augmentation on dopamine-type meds and remained severe, so either the diet works or the effect of augmentation is finally wearing off."

Are you implying that after the initial augmentation, your RLS stayed at a heightened level despite coming off the meds? This scares me as I have been using DA's intermittently to get sleep as I work to find a longer term solution. I always though that augmentation lasts for ~14 days until the meds are out of your system and your body resets so to speak.

You made the following statement, "My WED/RLS became severe after augmentation on dopamine-type meds and remained severe, so either the diet works or the effect of augmentation is finally wearing off."

Are you implying that after the initial augmentation, your RLS stayed at a heightened level despite coming off the meds? This scares me as I have been using DA's intermittently to get sleep as I work to find a longer term solution. I always though that augmentation lasts for ~14 days until the meds are out of your system and your body resets so to speak.

Yep - a few of us have thought that. We know it's counter to what the experts say, but mine definitely has reduced over time - and I mean lots of time, as in 10 years time! It's still much worse than when I started taking medication, but it's not 24/7 anymore. It went from 24/7 to 20/7 to 18/7 and now is about 12/7. Still more than the average bear, but not nearly as bad as it was.